So went back to see my neurologist, waited 3 months, he did not say much, just said “I can’t help you”, no diagnosis, no suggested treatments. He blamed my autoimmune diseases for the pain and I think neuropathy, he was a little unclear. Said it was due to my PsA being poorly managed.
I am getting concerned about my worsening paresthesia (prickly feeling) in my legs, torso and arms, when I get up in the morning, he seemed to be implying that it was due to PsA? Is that true? Seems more like small fiber neuropathy to me. That is why I went in to see him, still have no answers. He did order a MRA to check out the Pulsatile tinnitus I get at night, that will look for blockages in the blood vessels in the brain.
Also said I have pernicious anemia, so am taking 3000 mcg sublingual of B12, used to inject it a few years ago, but he said they have gotten away from that. Maybe it will help with the fatigue? I wonder if MTX is contributing to the large blood cells?
I’m thinking that pernicious anaemia and neuropathic symptoms go together. A quick google of pernicious anaemia suggested that quite a lot of PsA-type symptoms may also be due to this, including the fatigue. I wouldn’t mind betting that the injections help, I do hope so.
I get neuropathic pain in my ankles. It feels like electric shocks, usually at night and as they zap me every 20 seconds or so it is not bearable. After 2 nights I’m a wreck. Fortunately it has not gone on any longer than that so far. I also get them more randomly in my forehead, knees and occasionally in the torso. The ankle zaps tend to be linked to slight swelling, the other stuff foxes me more.
Also, sounds from your other post like it’s time to change biologics. When I last did that, my peripheral neuropathy magically disappeared. Not that I’m suggesting yours will, but it would at least rule out a possible cause for the neuropathy (unless you had it before remicade, in which case I guess that’s already ruled out…)
Those zaps! I only get them occasionally, like a icepick in the foot! The head zaps are very unpleasant… i see why people with those constantly will think of suicide. Mine are maybe once a month and very short duration.
So I just reviewed the notes of the visit, the neurologist is Dx’d it as Small fiber Neuropathy, so that makes sense, he just doesn’t express himself very well.
So my next treatment after the Vegan diet is:
Are you ready for it?
Transcendental Osteopathy! ???
This should be interesting, it is a hands on kind of place…
Big warning about the visit prep:
NOTICE: This is a chemical free/fragrance free office. Please do not wear fragrances of any type in this office, including, but not limited to: perfumes, colognes, scented antiperspirants/deodorants, powders or hairsprays. Some of our patients and staff have chemical sensitivities or allergies and are strongly affected by chemicals and fragrances. Please be aware that chemicals and fragrances in fabric softeners and some laundry detergents are too heavily fragranced and should be avoided on days you have an appointment with this office. If you are wearing perfumes or strong fragrances, you be asked to leave and not be able to see the doctor for your scheduled appointment. (Please see the document attached detailing our policy).
I already like this place! No scented candles allowed! Down with incense! For someone with multiple chemical sensitivities, this is music to my ears…
Hey Jon_sparky,
A neurologist who doesn’t express himself very well?
Hmmm, having LOTS of experience with neuro’s, I’m yet to find one who does.
Neuro’s are a very refined specialist, academically they may be brilliant but often their human interaction skills are close to nil. For me personally I have had so many such interactions with them that I now ‘try’ to avoid them like the plague, which is REALLY difficult for me as my condition is neurological. For many of them if you do not fit a specific ‘box’ or diagnosis or you do not respond favourably to a specific treatment, it’s as if they wash their hands of a patient.
I can assure you Jon, you are not alone in having such dealings with neuros.
Thanks, he is a unusual Neurologist, as he is a DO, what I wanted to find alternative treatments.
Turns out he is thinking the latest bout of system neuropathy may be caused by pernicious anemia, so I am going to try sublingual 3000mcg to bring up my B12. He failed to tell me that this could be the problem, he just rabbled on about anemia, when I researched it on the internet, I pieced it together. At the appt it sounded like he just shrugged and said “hell with it”.
I don’t know if it was also my expectations of finding help, when we all know they still do not have a clue, and always just write “idiopathic”. I kept telling myself not to get my hopes up. At least he helped with the Ulnar neuropathy, and is imaging the blood flow in the brain, that might be helpful, though again it will probably just say “normal”.
I was just trying to get the idiopathic part nailed down, if SFN might be autoimmune based, etc. I see the junior doctor next time, maybe she will explain more, sometimes they are a little more forthcoming.
I will probably get like you, “avoid at all cost!”
Speaking of cost, the Neurologist referred me to a Osteopathic doctor that does adjustments, code 98925 and code 98929 he is out of network. They charge $350 a visit! Probably not much hope getting the insurance company to cough up much money…
‘may be caused’?? But there are relatively simple tests for this … aren’t there? Surely you should have those tests before commencing treatment?
Seems to me that if it is pernicious anaemia, then you may have an important ‘lead’ so if it hasn’t been confirmed then testing would be the logical next step. There is also ‘anaemia of chronic disease’ … low level anaemia which is not helped by iron supplementation. Might that be it? I had that when PsA was diagnosed (first time in my life) but it was eventually kicked into touch by PsA meds.
Hey @Jon_sparky
I’m sorry you’re having all kinds of pain. I feel for you. I know that pain. My Neuro said the weakness and tingling, numbness, etc I’m having is from the herniated discs in my neck/spine. It supposedly affects all extremities and lower back. Causes headaches, horrible headaches. But he also didn’t give any sort of diagnosis or reason for it all, other than my spine problems.
He did schedule an epidural injection for me though. But that’s not until the 15th of this month. Praying it helps!!
I’m also wake up with “electric” sensations thru my body and “shakes”, horrible weakness in my hands and legs probably 75% of the time. MRI showed nothing wrong tho. So…
And only" diagnosis " I’ve had so far is osteoarthritis. Ugh.
Praying for you to find relief and get a diagnosis.
No, sorry I did not word it right, the blood test came back as pernicious anemia, I have that, just don’t know if it is the cause of the neuropathy getting worse. I have large blood cells and low normal B12…
Stenosis is terrible! Maybe you can get surgery to help with it? They are now able to replace the discs, instead of just fusing the joint solid, which a lot of times causes the same problem the next disc up. You should ask for a referral to a spinal surgeon. Hope the epidural helps, I have had a few… I think I have about 12 bulging discs and one herniated in my lower back, one is moderate/ severe on one side of my cervical C6/C7, I have had two epidurals in that area. The last one, the pain doctor had trouble placing the needle, because I had a large deposit of calcium in my skin from chronic inflammation, took him 25 minutes! Usually they go pretty fast, he was just being careful.
Hey @Jon_sparky. Thank you for your reply. Neuro referred me to a orthopedic surgeon that specializes in neck and spine surgery. He (spine surgeon) also referred me for an epidural injection. He said if it doesn’t help or symptoms get worse, he’d definitely recommend surgery. He was very positive that surgery would fix it if all else fails. Honestly I feel like sometimes I already have a rod in my back! Weird I know!
Oops sounds like discs, back ache, might not just be from improper desk posture. At the mo wear heels to alter my posture, walk in probably a ridiculous way, but makes my back feel better. Calcium deposits are a big issue have read oxalates in spinach and some foods may in fact create them? Guess whater one does has a flip side
Are you still taking MTX? If so there may be a much simpler answer to the anemia. Simply increasing your folic acid can fix that. It does not, despite widely held belief, reduce the efficacy of the MTX. You can not take too much as its water soluable. The worst that will happen is you produce expensive pee. I would tend to agree your PsA is not being well managed but then your constant self treatment, though I understand why, make it difficult.
If those treatments have no effect then they are a waste of money. IF they do have an effect then its logical they effect the treatment you are getting. maybe its time to discuss a medication holiday where you get off everything prescribed and mail order and simply start over.
Diagnosis of SFSN is based on history, clinical examination and supporting laboratory investigations. Electromyography and nerve conduction studies are done to eliminate involvement of motor and large sensory nerve fibers. Skin biopsies are used to confirm loss of cutaneous nerve innervation. JUST a history and clinical exam won’t do it. SFSN is most often due to diabetes or impaired glucose metabolism. When this doesn’t exist the diagnoses is more often a “get this guy out of my hair, he’s a nutter and if I give him a disease he’ll get out of my hair” kind of thing
Hi,
We discussed folic acid, I am taking 1,500 mg of Methal Folate, so he feels it is a B12 issue, since that is low normal. I have a history of low B12, before starting any meds.
Having had all the testing for SFN, with a history of over 30 years, before doctors even recognized the condition, there is plenty of evedence. What through him, was the lack of numbness, being primarily sensory. I went in for a second opinion on the condition, after reading about SFN being possibly caused by autoimmune. No one has ever tighed it to pre diabetes or diabetic resaons, though that is a popular cause. The thing that ticked me off, atthe fist visit he had several approaches to looking into cause, stenosis, autoimmune, inflammation etc. then the follow up, nothing was addressed, it consisted of “I cannot help you”. No indication that he had followed up on anything he said, probably just poor communication skills, many specialist seem to have. That being said, the B12 is helping with some of the latest issues, of system wide neuropathy and severe fatigue. It is difficult to get a quantitatve result, because all of these diseases wax and wane.
I will discuss my PsA meds with my Rheumy, there is the concern of stopping the last bioloic that has done any improvment, as it may not be able to be started again, if the body creates antibodies. The flare has lessened since I wrote my last rant, so I am on the fence on how to proceed.